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Author Topic: MACI - 6 years on and still doing great!  (Read 13766 times)

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Offline JulianUK

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MACI - 6 years on and still doing great!
« on: January 19, 2010, 08:03:21 PM »
All,

From time to time I pop back to this site to give an update on my progress. I won't bore people with exactly what has happened to my knees over the years but suffice to say that I have had MACI on both knees after years of other op's that all failed.

This last week I have run 5k twice on the treadmill - aversion to ice & falling on concrete! Then I spent two hours indoor climbing with my son, followed by an hour playing competitive badminton with friends on Sunday. Before I had these op's I never would have dreamed i could have achieved what I have this week.

If anyone needs a little encouragement or is feeling apprehensive about this procedure then don't be. Yes I go on about the long rehab and being guarded in the first few months, but looking back now I had good advice, followed it and as active as any other 41yr old I know. I am even starting a back to Hockey course in a couple of weeks!

If you need any advice then happy to give it.

Keep up the leg raises, ice and positive thoughts.

Jules
Julian

Offline Lottiefox

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Re: MACI - 6 years on and still doing great!
« Reply #1 on: January 19, 2010, 10:00:28 PM »
Hi,

Great to hear some good news! ACI/MACI has been suggested as an option for my patella problems - I know patella cartilage is a bummer to get to grow again but results with this seem better than anything else if you're trying to avoid PKR - I wondered where your defects were? Can I also ask where in the UK you had them done? What had failed previously?

Really encouraged by your story, may your progress and hockey playing go from strength to strength!

Lottie

PS If I go for it, I might well value some insider advice!  ;D
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline JulianUK

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Re: MACI - 6 years on and still doing great!
« Reply #2 on: January 21, 2010, 09:22:47 PM »
Hi Lottie,

I had femoral condyle defect in my left leg along with wear to undersurface of patella. I had grafts done to both areas some 6yrs ago. This was the first leg they operated on.
The following year I then had my right done, this time just a defect to my femoral condyle. I had previously had micro-fracture done in both legs and this provided only temporary repair.

In both cases I have had great results and like I said I'm doing really well.

I had my MACI done under Mr.Briggs & Mr.Polloack at Stanmore RNOH.

I was one of the early one's and the rehab protocol was very sketchy. I have seen the one they issue now and it is very good.

If you want to message me direct then please feel free to do so. I have a few people I have provided support to over the years and happy to help people out.

Jules
Julian

Offline GILLHORSE

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Re: MACI - 6 years on and still doing great!
« Reply #3 on: January 30, 2010, 03:55:54 AM »
Hello all,

I’m writing on here for a number of reasons. Of course, for the most obvious, I believe I’m in need of MACI in the near future. I have been following a number of articles in this forum, of most note and interest to me is from JulianUK and your experiences/situations etc with MACI.

Background.

I am a former Special Forces soldier from Australia who suffered a ruptured ACL (right leg) in 2005. Reconstruction went exceptionally well, no troubles from this at all however; I developed a lesion in my trochlear groove as a result of the initial injury and the circumstances which caused it. This lesion grew around 9 months after surgery and as such, was not identified until around 12 months post ACL surgery. Imagine trying to do squats/leg press etc to strengthen my quads, and unbeknownst to me, having a lesion growing in the groove, being large enough to destroy my knee cap! Tragic! The pain was annoying and I put it down to the ACL recovery. Silly me.

As a result, this lesion rubbed on the rear of my patella and subsequently wore away the sweet, natural cartilage there. I had a debridement of both the patella and the lesion in the trochlear groove (which was about 2cm L x 1cm W) in July 2006. Fibro cartilage followed etc and all seemed well for about 2 years. Obviously, with my ‘lifestyle’ and the level of activity I endured, I had subsequently degraded to the point where by I could no longer run, jump, ride, swim, carry any loads/pack etc. I was pretty much handicapped in the fact I couldn’t even enjoy gym training to strengthen my leg. This lack of strength in my leg has over the years led me to favouring it [right leg] and as such, much of the muscles on my right side, being my leg muscle, gluteus, lower back stabilisers etc are now so weak and imbalanced it is causing added dramas. I left my job which I loved dearly in late 2008 after seeing doctors/surgeons etc that said nothing could be done.

Enough complaining! Time to act! Recent MRI showed the following;

Full thickness (grade IV) chondral fissuring involving midline trochlear groove measuring approx. 2cm x 1cm with chondromalacia of the Patellae. Extent of which beyond MRI image. Previous arthroscopy (2006) detailed grade III at time.

I recently attended 2 OS here in Brisbane, Australia who said that they could not do anything for me due to the fact that, if I was to have MACI, it would not work because of the location of the grafts needed and during recovery, they would rub against each other with detrimental effects. Something along the lines of them being akin to kissing lesions?

Additionally, patella MACI are not a success and as such, they cannot attempt to repair both at the same time...

Questions.
1.    Julian, am I correct in reading that you had this (both patella and trochlear) on the same knee at the same time?
2.    Is there anyone on here from Brisbane Australia who may be able to refer me to another OS who can assist me, or within Australia who could help
3.    Does anyone have the contact details form Dr Briggs (I think it is) in the UK there. I’m more than willing to travel there to have this done if he  can bloody well help me.

Gill

Offline SevenofNine

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Re: MACI - 6 years on and still doing great!
« Reply #4 on: January 31, 2010, 10:11:04 AM »
Hi Gill,
I'm in Canberra and am booked to have MACI this Wed 3rd Feb - my lesions are big but are not kissing; see my post on this thread for details. There is some discussion on these boards about the problems with kissing lesions but at the end of the day prognosis has to be individually determined.

My OS is Richard Hocking in Canberra who assures me he has successfully performed many MACIs though with lesions that were not as big as mine! my choice to give it a go over a TKR.

All the best with your search.

7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline Rennschnecke

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Re: MACI - 6 years on and still doing great!
« Reply #5 on: February 02, 2010, 12:41:03 PM »
Hi Gill

I was really interested in your story.  The timeline also kinda matches my own.  I had an ACL reconstruction in 2005 and recovered brilliantly (never been fitter), but started developing issues through 2006.  Didn't discover cartilage lesion in trochlear until October 2006.  As cartilage lesions are unpredictable in their symptoms I was told to just do everything I normally would.  So off I went teaching and coaching alpine skiing, racing etc. – full on as much as possible (which became increasingly less) and hobbling away at the end of the day if at all able to stand/walk.

Was down for repair this in December 2008, but discovered extensive wear of trochlear and patella.  GULP! [That was the OS  ;)]  Had MACI 2009 large kissing lesions in the patellofemoral groove [total c. 16 sq cm] and I keep being told we're pushing the boundaries here.  So, yes – you can have kissing lesions done.  It's just they are more difficult and the outcomes are not necessarily so good. – I've done everything I was told and still have complications.  May not be a bad thing in the long run as I'm prevented from overdoing things.

As for Tim Briggs' contact details, if he isn't listed on the board he can easily be found via Google using 'Tim Briggs Stanmore'.  He's one of the leading surgeons in cartilage repair in the UK.  If you plan to have the procedure done in the UK you maybe want to plan to live here a while for rehab etc. as well.  If this isn't part of your plans you may find it better to have it done in Oz but I hear your problem of finding someone who is happy to do this work.  Maybe it's worth contacting some of the major OSs who do this work (e.g. Minas and Cole) to see whether they know of someone in Oz.  This is an elite group of surgeons who all meet at international conferences so they probably know everyone. ;)

I wish you all the best with your search.  I hope it comes soon
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline ajschnelk

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Re: MACI - 6 years on and still doing great!
« Reply #6 on: February 02, 2010, 03:29:40 PM »
I figured I should follow up with my experience since it is very similar. 

I tore my acl in '98 and made a full recovery and got back to everything 100%...basketball, skiing, running, etc.  In 2004 while playing bball the knee swelled up all of a sudden.  A few months later discovered that I had a small trochlea lesion and had microfx on it in 2005.  To this day, I am not sure if the lesion is due to the ACL injury or not.  I never recovered completely afte the microfx and it actually made it worse.  The lesion never really affected me with everyday stuff, but I got tired of  not being able to run along with other casual sports, so I contemplated aci for about a year and finally decided to go forward with it this past decemeber and had aci of the trochlea along with an AMZ.  Up until my surgery, I had a single trochlea defect approx 2cmx2cm...during the procedure my OS (Dr. Cole) discovered that the backside of the patella had a soft spot with grade 3 changes with a size less than 1cmx1cm.  Given that it was kissing the trochlea lesion (the worst defect) he did not touch the patella.  He mentioned even if they weren't kissing, the patella lesion was so minor he probably wouldn't have done anything with it anyway.  He also said that this is why he peformed the AMZ.  The amz was a 50/50 call going into surgery.  He believes that once I fully recover, the patella will not not be an issue since he performed the amz.  If you have read through my posts you'll see that I have never mentioned the patella piece and that's only becuase I just read the post op report a couple weeks ago for the first time and didn't really have any details on it prior.  Immediately after surgey he mentioned that there was a soft spot, but that it was nothing to worry about, so i didn't.  Now, it's of course on my mind every minute I rehab, but I am trying to not think about it. 

Long story short, Cole is my OS, and I don't believe he will do aci on two lesions that are kissing based on what he told me. However, mine didn't seem too much of a concern to him, so if the circumstances are different, he may elect to do so.  I'm sure it's something he'd discuss with you and would provide the risks of doing them simultaneously, if it is an option.    Like Renn mentioned, it wouldn't hurt to contact Minas and/or Cole here in the U.S. for additional opinions.  Best of luck!
« Last Edit: February 02, 2010, 03:32:25 PM by ajschnelk »

Offline GILLHORSE

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Re: MACI - 6 years on and still doing great!
« Reply #7 on: February 08, 2010, 01:43:54 PM »
Thanks for the replies everyone.

I’m sure we can all concur that our situations are nonetheless frustrating and time consuming.

Rennschnecke, you said that you had a kissing lesion and have had it repaired but are still suffering complications with it. What are these complications etc? Secondly, does it look like it will improve in the future in order to enable you to return to ‘normal’? I guess I’m looking for some positive influences to give me a little motivation that this will more probably than not work...

Put it this way, I will travel to the North Pole if someone can vouch for Santa bringing me a miracle cure to this imbuggerence  ;D

Offline JulianUK

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Re: MACI - 6 years on and still doing great!
« Reply #8 on: February 08, 2010, 08:53:26 PM »
Hi GILLHORSE,

If I can help then i will.

Firstly in my left knee I had both my MFC and patella grafted at the same time. I didn't have issues with the troculor grove so can't comment on whether or not it is possible to graft both that area and the patella.

The websites to look at are:-
http://www.rnoh.nhs.uk/clinical-services/joint-reconstruction/cartilage-transplantation (this is where I was done under Mr.Briggs & Mr.Pollock)
and
www.maci.com

As you have probaly gathered from my posts I am pretty active and can walk, run, climb, bike, hike, etc. Although have avoided contact sports as I do not want to go back where I was. My life is great and I want to keep it that way.

As I always say this is a long road to recovery and not a quick fix, so if you go down this route be prepared for the long slow slog. Let me know how you get on and message me direct if you come over to the UK and I would be happy to meet up.

regards,

Jules
Julian

Offline Rennschnecke

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Re: MACI - 6 years on and still doing great!
« Reply #9 on: February 09, 2010, 01:04:27 AM »
Hi GILLHORSE

I've developed arthrofibrosis, one of the common complications of ACI/MACI especially for patellofemoral repairs (affects something like 1/3 of patients in the category).  My kissing lesions were huge and I keep being told that they're pushing the envelope in my case – presumably because of the size, location and 'kissing' aspects.  As a result I was immobilised for a week (none of that hanging it over the bed stuff :o!).

That said, the cartilage implants are doing great.  All smooth, well integrated and absolutely no crepitus.

I've had a debridement as my ROM didn't really get to 90 deg after 14 weeks and now my patella tendon is stuck down.  Looks like I'm due for an anterior interval release next; just want it to be done before any risk of permanent patella baja and then advanced infrapatellar contracture syndrome.  If that happens and if I don't develop CRPS I have hopes of having a good knee at the end.

Stuck in the middle of this I am really hurting and fed up with cycling from 2 crutches to 1 crutch to no crutch to 2 crutches etc.  I've spent most of the last 14 months on crutches (around 7 months of this was before the implantation) so I am pretty  :'( :'( :'(.  However, I'd still make the same decision given the same circumstances and there is still the possibility that it will all turn out good in the end as I can hardly overdo the activity side of things.  The real unfortunate ones are my family who have to bear the brunt of the fall-out.

I don't want to put you off.  The chances for success from ACI or MACI for PFJ can be around 75% even for kissing lesions.  In my case, I think the lesions were just a bit on the large side (substantially beyond criteria) but it was a 'no brainer'.  I could barely walk away from work (ski coaching), I was fairly apprehensive about taking groups in some terrain as I might not make it down and my ability to travel was reducing as I couldn't sit in a car for even an hour and a half.  To make it easy, after chrondoplasty failed my options were to have salvage surgery or PFJR.  Went the salvage surgery route with the thought that if it failed I won't be any worse off (apart from all the rehab which I have been doing since 2005) and the technologies for PFJR may have improved.  [I'm having a stinker of a mental battle at the moment though and I think that is always difficult to assess no matter how much you know it intellectually.]

I got the impression that you feel you're in the same place I was and I truly understand the issues.  So after all this verbage, I'd say I reckon I could still have a good knee if I can sort out the arthrofibrosis quickly but the mental battle is huge and I'll put my neck out by saying it's harder than normal owing to complications.

I'd really be interested in knowing what you decide to do so keep on posting!

1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline GILLHORSE

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Re: MACI - 6 years on and still doing great!
« Reply #10 on: February 13, 2010, 04:45:44 AM »
Once again thanks to everyone for their posts.

Julian, I was of the original opinion that your MACI was indeed a Trochlea grove complication. You are correct, it does change this a bit but; I still love your posts and gain great motivation etc from reading them etc. I will certainly keep you in the loop if; in the long run I end up over seas to take the plunge etc.

Rennschnecke, mate, what a bad run you’re having! I tend to agree with you and I can certainly see your point. Not having a functioning keen as it was, I guess what did you have to loose?

I will admit I am not as bad as your original situation. I am still mobile, but I can not run, jump, place any force through the joint (ie: walk up/down stairs) without some discomfort or compensation thus leaning more on the other leg.

To me, I certainly feel immobile due to my previous lifestyle etc. I would dearly love to run a simple 5km, or do some squats, ride my bike on so on.

As I have posted previously, I have had a debridement and thus, have fibro-cartilage. As I have researched, and was advised by the O.S at the time, this is only a temporary stop gap solution destined to last around 5 years or so. The suggestion from the current O.S was to do micro-fracture. Again, another temporary stop gap and not directly  addressing the issue. GRRRRR.   >:( >:( >:( >:(

In essence, I’m going no where with my current position so what do I have to loose?
 
As for the mental strength issue, without in any way attempting to sound arrogant/cocky etc, I certainly feel that I am more than prepared and capable of doing this. The mental issue will be the least of my issue. Set goals, chip away, smile and carry on

I shall keep you all updated… somewhere on here. 

Offline KartBoy

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Re: MACI - 6 years on and still doing great!
« Reply #11 on: May 22, 2010, 08:16:13 PM »
Hi Jules

Quick question, I'm having first operation four weeks today (can't wait), I had a TPF after being hit by a careless driver, what caused your injury out of curiosity?, I only met Prof Briggs a couple of times and hes a bit hard to pin down so really trying to understand more about the procedure and rehab. I understand its still a clinical trial but Prof Briggs has done over 400 now and he reckons only a few patients ever regretted it.

Its great to hear your so active but for the moment I'm just hoping to be able to walk up and down stairs with maybe very light skiing in the future, anything else would be a bonus  :).

Regards

Andrew
7th Mar 08 - Pedestrian hit by car
10th Mar 08 - TPF (Plate + 6 screws)
12th Mar 08 - TPF Revision
Feb 09: Hardware removed + scope
Jun 10: ACI Stage I
Aug 10: ACI II (Stanmore)
Oct  11 - MRI + Scope (In pain)
Aug 12 - MRI + Scope (In more pain)
Sep 12 - TKR ruled out :(

Offline stevejill91

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Re: MACI - 6 years on and still doing great!
« Reply #12 on: May 25, 2010, 12:27:09 AM »
Its been about 18 months for me and things seem to be going great. Pne question from someone who has been there. I get a tenderness in the knee area whe under load. its seems more like a weakness  maybe due to the muscle disfunction after surgery. When i work out it becomes tender/ sore then goes away after a day. It is still tender at thei point but much less. Some have said its due to weakness in the muscles around the knee. I wanted your opinion. I am working it and I know that improvements come in 3-4 month stages. Is this normal and will it eventually go away were I can put full load with out this sensation. I will be getting my other knee done in november.

Offline JulianUK

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Re: MACI - 6 years on and still doing great!
« Reply #13 on: June 08, 2010, 09:50:06 PM »
Hi Broxy,

Firstly good luck and if you've read my posts then you will know that i preach to everyone that this is a marathon not a sprint and give the new cartilage at least 6-9mnths before you start hammering the PT.
I had problems with my cartilage from as young as 14-15. I had my first tear and scope to trim the cartilage at 15. Then later on I had overgrown bone in my knee when age 21, the knee locked and i had to have the growth spur removed - all left so far. Then into my late 20's I did a partial tear of my ACL, this time in my right knee. Then in my early 30's I started to get soreness in both knees, but the left was worse. I had a few operations on both, that included micro-fracture which in one knee only lasted a few months.

As you can see with me it wasn't one thing that did my knees in but a combination of different problems that lead to my cartilage ultimately caving in at an early age.

All I can say is that it's worked for me in both knees.

Jules
Julian

Offline JulianUK

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Re: MACI - 6 years on and still doing great!
« Reply #14 on: June 08, 2010, 10:01:33 PM »
Hi stevejill91,

I used to get this very same tenderness in my knee. My PT put it down to weakness in the muscle and stress loading on the tendon, also later he thought the fat pad was getting tender. I do know from time to time I have got some fat pad impingement, but it doesn't last for more than a week as lone as I ice it. I know it has nothing to do with the cartilage graft but rather than a general weakness and instability in the muscles surrounding the knee. Incidentally the more I do now the less problems i seem to have - touch wood.

I just ran 5miles in under 40mins two days ago, best run for some 16yrs. I never in my wildest dreams thought I would have been able to do that when I was at my lowest point some six yrs ago! I try to explain to people who see me now and didn't know me from before, what it was like taking strong pain relief drugs all the time and hobbling around on crutches, but I don't think some of them believe it was that bad. I know what this procedure has done for me and how far I've come and that's all I really care about.

If you need other advice then just get in touch, drop me a personal message as that comes direct to my email and I will probably answer quicker than if you just post on the forum, I don't check back that regularly.

Take care and all the best with the other knee as well.

Jules
Julian















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